Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Hey there, Tony survived the trip to the hospital to have the abcess cut out following his crohns flair. He had an infection in his body so he has been on heavy duty antibiotics and prednisone. He has stopped antibiotics and started with a rash and bad itching. He has been to two 3 Drs and no answer as to what it is. One Dr gave him atarax for itching and that seemed to help. They think it could be his liver but not sure.Now hehas been nausious for two days it seems likesomething is backing up in his stomach because he keeps getting this mucus like substance he keeps having to spit out.He does not have a cold or allergies or anything. When he drinks liquids it comes right back up most of the time.He keeps going to the Dr and they don't know what to do for him. We are very frustrated that no one can do anything for him. We have been waiting for two weeks to get an appointment with a specialist at Shands in Gainesville, FL and can't even get an answer as to when he can be seen. One Dr did do blood tests and his biliruban is normal.He is not jaundas. His alkaline phosphatase is 358,ast 117,alt 302.Which are all high. White bloodcell 20.4.He has been on prednisone for almost 2 months so it could becausing that to be high. His C-reactive Protein 1.12H,GGT 1445. I know you are not Dr'sbut I am very concerned and wondering if I should drive the 2 hours tomorrow to take him to Shands myself. It might be something bad wrong with him and all this time waiting he is getting worse. Could this be sepsys? You guys always coem through for me and I appriciate all your help always. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Clearly something is not right here. Is he running a fever? What about pain? How long was he on the antibiotics -- could he be having a slightly delayed allergic reaction? I, personally, would not want to wait because bringing liquids back up after drinking sounds like an emergency to me, but I am hoping someone else can give you a more educated answer. I'm thinking that waiting for morning and a two hour drive might be too much of a delay. Anybody else have a comment? Penny > allergies or anything. When he drinks liquids it comes right back up most of the time.He keeps going to the Dr and they don't know what to do for him. We are very frustrated that no one can do anything for him. We have been waiting for two weeks to get an appointment with a specialist at Shands in Gainesville, FL and can't even get an answer as to when he can be seen. > I know you are not Dr'sbut I am very concerned and wondering if I should drive the 2 hours tomorrow to take him to Shands myself. It might be something bad wrong with him and all this time waiting he is getting worse. Could this be sepsys? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 , I have nausea problems and increased itching when I have an infection in my bile ducts. The worse my infections are the more problems I have with nausea. I have gotten infections a few days after I stopped antibiotics so I think it is possible that an infection is the culprit. Also I would check his temperature and see if he has a fever. Not sure you want to wait to go to the hospital if it is an infection. I was told after my last series of infections that getting antibiotics asap was key to avoiding sepsis. Darcy Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , what did you decide to do? Penny- I know you are not Dr'sbut I am very concerned and wondering if I should drive the 2 hours tomorrow to take him to Shands myself. It might be something bad wrong with him and all this time waiting he is getting worse. Could this be sepsys? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , what did you decide to do? Penny- I know you are not Dr'sbut I am very concerned and wondering if I should drive the 2 hours tomorrow to take him to Shands myself. It might be something bad wrong with him and all this time waiting he is getting worse. Could this be sepsys? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , what did you decide to do? Penny- I know you are not Dr'sbut I am very concerned and wondering if I should drive the 2 hours tomorrow to take him to Shands myself. It might be something bad wrong with him and all this time waiting he is getting worse. Could this be sepsys? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , Hi. I hope you all are doing a bit better than your last post...actually, I hope you're doing tons better than your last post. I was wondering (and I hope this isn't overstepping or rude) but what about taking him to the Mayo Clinic in ville instead? It's only about an hour and a half (I think) from Gainesville and they are pretty good about getting people in quickly. Anyhow, I thought I'd offer that up for what it's worth! Sandi in VA (Okay, not in VA, in Rochester wanting to be in VA yada yada yada) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , Hope Tony feels better soon, I just got out of the hospital after one month of not eating due to severe Crohns. I lost 15 pounds and was on a clear liquid diet/steroid IV Medrol for over a week. Seriously hellish!. Stay positive! Andi PSC Crohns 01/02 California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , Hope Tony feels better soon, I just got out of the hospital after one month of not eating due to severe Crohns. I lost 15 pounds and was on a clear liquid diet/steroid IV Medrol for over a week. Seriously hellish!. Stay positive! Andi PSC Crohns 01/02 California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , Hope Tony feels better soon, I just got out of the hospital after one month of not eating due to severe Crohns. I lost 15 pounds and was on a clear liquid diet/steroid IV Medrol for over a week. Seriously hellish!. Stay positive! Andi PSC Crohns 01/02 California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Andi, Hi! I just got active again. I was wondering how you were. I'm so sorry you've been in the hospital AGAIN. I think of you often. We first met on the liver support group late '00 thinking we had Autoimmune Hepatitis and then you got your correct diagnosis and moved here, a month or so later I also got a corrected diagnosis and moved over. Obviously, you've had some new problems. After about 5 years of being told I was imagining or exaggerating conditions, I've been diagnosed with Relapsing Polychondritis. Haven't decided how to treat it yet. In day-to-day living, it is causing me more pain and therefore more problems than the PSC. What's the update on your conditions. Have your eyes bothered you lately? Hope to hear from you soon. Cheryl ID Re: Please Help Sick hubby! > , > > Hope Tony feels better soon, I just got out of the hospital after one month of not eating due to severe Crohns. I lost 15 pounds and was on a clear liquid diet/steroid IV Medrol for over a week. Seriously hellish!. > > Stay positive! > > Andi PSC Crohns 01/02 California > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Andi, Hi! I just got active again. I was wondering how you were. I'm so sorry you've been in the hospital AGAIN. I think of you often. We first met on the liver support group late '00 thinking we had Autoimmune Hepatitis and then you got your correct diagnosis and moved here, a month or so later I also got a corrected diagnosis and moved over. Obviously, you've had some new problems. After about 5 years of being told I was imagining or exaggerating conditions, I've been diagnosed with Relapsing Polychondritis. Haven't decided how to treat it yet. In day-to-day living, it is causing me more pain and therefore more problems than the PSC. What's the update on your conditions. Have your eyes bothered you lately? Hope to hear from you soon. Cheryl ID Re: Please Help Sick hubby! > , > > Hope Tony feels better soon, I just got out of the hospital after one month of not eating due to severe Crohns. I lost 15 pounds and was on a clear liquid diet/steroid IV Medrol for over a week. Seriously hellish!. > > Stay positive! > > Andi PSC Crohns 01/02 California > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Andi, Hi! I just got active again. I was wondering how you were. I'm so sorry you've been in the hospital AGAIN. I think of you often. We first met on the liver support group late '00 thinking we had Autoimmune Hepatitis and then you got your correct diagnosis and moved here, a month or so later I also got a corrected diagnosis and moved over. Obviously, you've had some new problems. After about 5 years of being told I was imagining or exaggerating conditions, I've been diagnosed with Relapsing Polychondritis. Haven't decided how to treat it yet. In day-to-day living, it is causing me more pain and therefore more problems than the PSC. What's the update on your conditions. Have your eyes bothered you lately? Hope to hear from you soon. Cheryl ID Re: Please Help Sick hubby! > , > > Hope Tony feels better soon, I just got out of the hospital after one month of not eating due to severe Crohns. I lost 15 pounds and was on a clear liquid diet/steroid IV Medrol for over a week. Seriously hellish!. > > Stay positive! > > Andi PSC Crohns 01/02 California > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 Cheryl, Iam feeling fair..what a complicated mess Crohns is. Terrible night sweats and chills (not PSC). Unable to eat even a peice of bread. Finally hospitalization and the thought that I might have to deal with parenteral nutrition. I was on Injectable Medrol for nine days and only drank broth. Then of course there is the heparin.. Its very very taxing mentally.. I know that you have been thru some awful times Cheryl..honestly I dont know how you do it. I have not had any problems with my eyes other than the steroid related blur. Iam on 40 mg of Prednisone for one month as we speak. I remember someone else in the group mentioning polychondritis. Its good to hear from you. Warm thoughts your way! Andi PSC/Crohns 01/02 Modesto California (where every tree is in bloom) > > Andi, > Hi! I just got active again. I was wondering how you were. I'm so sorry you've been in the hospital AGAIN. I think of you often. We first met on the liver support group late '00 thinking we had Autoimmune Hepatitis and then you got your correct diagnosis and moved here, a month or so later I also got a corrected diagnosis and moved over. Obviously, you've had some new problems. After about 5 years of being told I was imagining or exaggerating conditions, I've been diagnosed with Relapsing Polychondritis. Haven't decided how to treat it yet. In day-to-day living, it is causing me more pain and therefore more problems than the PSC. What's the update on your conditions. Have your eyes bothered you lately? Hope to hear from you soon. Cheryl ID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 Cheryl, Iam feeling fair..what a complicated mess Crohns is. Terrible night sweats and chills (not PSC). Unable to eat even a peice of bread. Finally hospitalization and the thought that I might have to deal with parenteral nutrition. I was on Injectable Medrol for nine days and only drank broth. Then of course there is the heparin.. Its very very taxing mentally.. I know that you have been thru some awful times Cheryl..honestly I dont know how you do it. I have not had any problems with my eyes other than the steroid related blur. Iam on 40 mg of Prednisone for one month as we speak. I remember someone else in the group mentioning polychondritis. Its good to hear from you. Warm thoughts your way! Andi PSC/Crohns 01/02 Modesto California (where every tree is in bloom) > > Andi, > Hi! I just got active again. I was wondering how you were. I'm so sorry you've been in the hospital AGAIN. I think of you often. We first met on the liver support group late '00 thinking we had Autoimmune Hepatitis and then you got your correct diagnosis and moved here, a month or so later I also got a corrected diagnosis and moved over. Obviously, you've had some new problems. After about 5 years of being told I was imagining or exaggerating conditions, I've been diagnosed with Relapsing Polychondritis. Haven't decided how to treat it yet. In day-to-day living, it is causing me more pain and therefore more problems than the PSC. What's the update on your conditions. Have your eyes bothered you lately? Hope to hear from you soon. Cheryl ID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 Cheryl, Iam feeling fair..what a complicated mess Crohns is. Terrible night sweats and chills (not PSC). Unable to eat even a peice of bread. Finally hospitalization and the thought that I might have to deal with parenteral nutrition. I was on Injectable Medrol for nine days and only drank broth. Then of course there is the heparin.. Its very very taxing mentally.. I know that you have been thru some awful times Cheryl..honestly I dont know how you do it. I have not had any problems with my eyes other than the steroid related blur. Iam on 40 mg of Prednisone for one month as we speak. I remember someone else in the group mentioning polychondritis. Its good to hear from you. Warm thoughts your way! Andi PSC/Crohns 01/02 Modesto California (where every tree is in bloom) > > Andi, > Hi! I just got active again. I was wondering how you were. I'm so sorry you've been in the hospital AGAIN. I think of you often. We first met on the liver support group late '00 thinking we had Autoimmune Hepatitis and then you got your correct diagnosis and moved here, a month or so later I also got a corrected diagnosis and moved over. Obviously, you've had some new problems. After about 5 years of being told I was imagining or exaggerating conditions, I've been diagnosed with Relapsing Polychondritis. Haven't decided how to treat it yet. In day-to-day living, it is causing me more pain and therefore more problems than the PSC. What's the update on your conditions. Have your eyes bothered you lately? Hope to hear from you soon. Cheryl ID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 Chaim, When I was put on Medrol, the night sweats and chills stoppped. Blood tests negative for any sepsis. My bile duct strictures had not appeared to have changed any in the last year or two. Liver enzymes and bilirubim had not changed. Several things can lead to night sweats and chills..(my list) bile salt buildup and blowout viral origin (cytomegalovirus) sepsis crohns (bacterial infection) long standing disease stent (clogged) temperature regulation issue (related to PSC or IBD??) stricturing My night sweats have been releived by Zozyn (IV antibiotic), stent therapy, and steroids. Individually. Warm Regards, Andi PSC Crohns 01/02 Modesto California > > Andi, > > > > Why do you say that the night sweats are not PSC related? I do not have IBD > (I just had another colonoscopy to rule it out again) but I do have severe > night sweats. > > > > What do you do against night sweats? > > > > Regards, > > > > Chaim Boermeester, Israel > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 Chaim, When I was put on Medrol, the night sweats and chills stoppped. Blood tests negative for any sepsis. My bile duct strictures had not appeared to have changed any in the last year or two. Liver enzymes and bilirubim had not changed. Several things can lead to night sweats and chills..(my list) bile salt buildup and blowout viral origin (cytomegalovirus) sepsis crohns (bacterial infection) long standing disease stent (clogged) temperature regulation issue (related to PSC or IBD??) stricturing My night sweats have been releived by Zozyn (IV antibiotic), stent therapy, and steroids. Individually. Warm Regards, Andi PSC Crohns 01/02 Modesto California > > Andi, > > > > Why do you say that the night sweats are not PSC related? I do not have IBD > (I just had another colonoscopy to rule it out again) but I do have severe > night sweats. > > > > What do you do against night sweats? > > > > Regards, > > > > Chaim Boermeester, Israel > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 Chaim, When I was put on Medrol, the night sweats and chills stoppped. Blood tests negative for any sepsis. My bile duct strictures had not appeared to have changed any in the last year or two. Liver enzymes and bilirubim had not changed. Several things can lead to night sweats and chills..(my list) bile salt buildup and blowout viral origin (cytomegalovirus) sepsis crohns (bacterial infection) long standing disease stent (clogged) temperature regulation issue (related to PSC or IBD??) stricturing My night sweats have been releived by Zozyn (IV antibiotic), stent therapy, and steroids. Individually. Warm Regards, Andi PSC Crohns 01/02 Modesto California > > Andi, > > > > Why do you say that the night sweats are not PSC related? I do not have IBD > (I just had another colonoscopy to rule it out again) but I do have severe > night sweats. > > > > What do you do against night sweats? > > > > Regards, > > > > Chaim Boermeester, Israel > Quote Link to comment Share on other sites More sharing options...
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